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    Food intake.

    Both myself and my partner who has MND are, shall we say, on the heavy side. Always enjoyed our food, going out and eating with friends etc. shortly after diagnosis we were enrolled into a research survey thingy between Oxford and Sheffield uni. Our part is to log what my partner eats, on three separate days each week and report to them in a zoom session once a month.
    We had already been told to keep our calorie intake up by our specialist nurse we thought we wouldn't have a problem given our history, but, I have noticed that my partners appetite has started to drop and I am wondering if it is a response to the mental stress and fear she is experiencing or is it an actual part of what MND does to the body.
    Wondering if this is what others have experienced?

    #2
    I was a big eater, cooked breakfast, cooked lunch and big supper. Since symptoms began it was taking longer and longer to eat 'normal' food so I switched to small bite ready meals, and then my tounge died and I became a pumping station! Through it all tho I was never hungry. I used to live to eat.....Now I eat to live. πŸ˜‰πŸ˜πŸ€—πŸ‘xx
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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      #3
      Hi Chris, I too lost my appetite with MND having always enjoying a healthy diet.Like Matthew ,said, I began to take longer to eat smaller portions.I was advised to get a PEG put in place and now eat what I can manage( mainly bite size and softer diet) and top up via the PEG using prescribed supplements.Obviously muscle loss contributes to my weight loss.
      Now I try to maintain weight and have regular support from nutritionist to advise.
      Pre diagnosis and over a period of 6 months I lost a lot of wait due to the stress of not knowing what was wrong with me.
      My suggestion would be for your partner is to seek advise from the nutritionist or dietician .
      Best wishes
      Mary

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        #4
        Weight not wait!

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          #5
          Stephen tells me hes not really hungry. Now I just put a meal in front of him and it's gone. I've been told bite sized and soft but he eats everything no problems even missing his top teeth. Hes stable at 13 stone so I'm happy with that. He has a peg and sachets but its on hold until his peg is replaced this month.

          Perhaps tempting food she used to enjoy. Something to get the mouth interested before it arrives on the plate.

          Stephen is really enjoying sweet stuff too which is surprising considering he was never fussed and I've got him sharing a glass of Guinness.

          😘
          when i can think of something profound i will update this.

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            #6
            Enjoy it while it lasts mate πŸ˜‰πŸ˜πŸ€—πŸ˜˜xx
            Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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              #7
              Hello all,

              Loss of appetite is an MND symptom – somebody will come along and remind me in a moment.

              But I think it's a hippocampus thing

              I'm also in that place where I don't feel hungry and eat simply because stuff is put in front of me – Although I still have my likes and dislikes and things I have to avoid like those things that cause gout
              Warmly


              Andy

              ​Diagnosed 03/2015. One sided limb onset (arm) sporadic PMA/MND - now 50% left arm and 90% right arm, plus other bits including left shoulder– Campaign contact Winchester and Southampton branch, and trustee of the Association

              "Things turn out the best for people who make the best of the way things turn out"

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                #8
                I will always be grateful to my mum who had a simple rule at mealtimes. Eat whats infront of you or go without. As a man I could eat anything.xπŸ˜πŸ€—πŸ€£πŸ˜xx
                Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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                  #9
                  I too have a healthy appetite but frustratingly I now eat less. I think this is because I am-in a wheelchair and I find food takes longer to digest because I don’t move as much. My eyes are definitely bigger than my stomach but I have started suffering from indigestion and reflux. It’s just not fair!!!!!

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                    #10
                    I'm not nearly as hungry as I used to be and struggle with my appetite, although I am lucky that my swallow is still OK .

                    I'm not sure if it's because of MND or inactivity or a bit of both. I find if I have just fruit juice and a milky drink in the morning I am hungry enough to eat at lunchtime and then have a light supper.

                    I think I'm not hungry but sometimes if it's put in front of me I eat it. My hubby makes me small portions so I don't feel outfaced. I remember doing this with my children when they were little so they could have the satisfaction of asking for more !

                    I'm not sure if this is right as I know we need calories but my weight is relatively stable.
                    Love Debbie x

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                      #11
                      My regime of liquid feed has brought my weight up to 11.6 stone. Make the most of eating while you still can. πŸ‘πŸ€—πŸ˜˜πŸ˜xx
                      Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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                        #12
                        Originally posted by Chris Mottram-Wooster View Post
                        I am wondering if it is a response to the mental stress and fear she is experiencing or is it an actual part of what MND does to the body.
                        There are several culprits for reducing appetite in MND Chris and the most common one in the early days is anxiety and/or depression linked.

                        As the disease progresses, there are physical reasons too, including difficulty swallowing, full stomach making poor breathing even harder, constipation, the hassle of going to the loo, side effects of meds, reduced physical activity and our old friend, apathy.

                        There probably are biological factors too, such as disturbances to hypothalmic regulation and certain amino acids giving us a false sense of fullness.

                        Help is available through, for example, antidepressants, modified diet, feeding tube, nutrition drinks (from GP) or *eating smaller, tasty meals more often* rather than the traditional 3 meals per day.

                        It is so important to try and maintain an appetite - MND is hungry/demands energy and needs to be fed.

                        Love Ellie.
                        ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                        Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                        ​

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                          #13
                          denise I used to prefer savoury over sweet any day, but now I can only really taste sweet things. Sadly wine just tastes sour to me now so I can only drink a very dilute whisky and lemonade or - don’t laugh- a snowball (advocaat and lemonade).

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                            #14
                            Any port in a storm! πŸ˜πŸ€—πŸ˜˜πŸ˜xx
                            Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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                              #15
                              Originally posted by SallyAnnB View Post
                              ... or - don’t laugh- a snowball (advocaat and lemonade).
                              Gosh, do they still make Snowballs 😲🀣😘

                              ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                              Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                              ​

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